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Overwhelmed with emotions!
my daughter karahgan has aa, but it's pretty much turning in to totalis, we will be getting her wig at the end of april but i find every day harder and harder as her hairs falls out more! i know this is soo selfish of me to feel this way but i keep asking why, why does it have to be her, why does MY lil girl, my only lil girl have to have this! i get so sick when we go in public bc people stare at her, she is 4 and it's starting to bother as well! i just want to scream it's just hair people, she isnt dying, stop looking! karah doesnt want to wear hats or bandannas, which is fine with me but i just sometimes can not bear the stares we get! im so excited about her wig but im fearfull she wont want to wear it or she will think it's a toy and i know i have to enforce rules and monitor her with her wig! i guess i feel ashamed that i want her to wear her wig bc im tired of people staring at us! the other day she had a mini melt down bc she doesnt like looking diff, as a momma that is soo hard bc no matter what you cant make that bad thing go away thats doing this to her! well anyways if any one has any advice or wisdome i will take it all! thx kristen
Replies to This Discussion
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Permalink Reply by Andrea & Ethan Talamantez on
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It's funny because I woke up this morning feeling great and so did Ethan. I guess our kids feed off our emotions. I was just so upset with my derm because I requested a thyroid test, blood work to check for any vitamin diffenciencies, test to check for parasites and she only agreed to the thyroid and that was like pulling teeth. I called our pediatrician and we have an appointment today to disuss the testing i'm requesting. I'm hoping he'll run them. I'm almost certain he will. I've been doing a lot of research and I will feel better knowing all this has been run on him. We have our first appointment with a psychologist this Monday. We also meet with our Derm doctor. I guess i just need to take a breather from trying to find answers and just accept the fact that he has no hair. Our family has been very supportive and I'm thankful for that. Daddy, Uncle and Cousins have all volunteered to shave their heads until Ethan grows his hair back.. HMMMM I wonder how long that will be? But at any rate just offering to do that to make Ethan feel a bit more normal or accepted has overwhelmed me with great emotion. Ethan on the other hand says NO WAY, he's not shaving his head completely. This website is another source of support and comfort that I've found and am greatful for. Well we meet with our pediatrician today so wish us luck!
Thank you!
Andrea
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Well Yesterday was definatly a great day. We met with our pediatrician. He agreed to do all the thyroid testing, vitamin diff testing and parasite in the stool testing. I really think he is doing this to give me peace of mind. He did agree that it wouldn't hurt so why not? I just Love DR. BYRD! He used to be my pediatrician when I was 10 through age 18! So he's like family to me. He just seemed so concerned and supportive. It was awesome because during Ethan's examination we noticed 3 spots of new growth.. It's like he woke up with them.. Because I swear I didn't notice them the day before and I check him from head to toe daily. He has such dark hair and some patches are coming in sort of blondish red color.. We don't care what color his hair is.. As long as it's hair. He was so excited and couldn't wait to show Daddy and grandma. He had a baseball game yesterday and did awesome.. He seems so much happier these days.. Its funny because all this alopecia drama has brought my ex husband and I closer. We've decided to make things work. Its been a month since we started dating and we all seem so much happier especially Ethan... OMG as I'm typing this I am realizing that he was 2 when the spots started and that is the exact age that his dad and I split up. I guess in his own way he felt the stress and this could have been a contributing factor that jump started the alopecia? Hmmmmm Well I'm not going to dwell but just be greatful that he has hair growth and is happy! I can't wait to visit our Derm Doctor on Monday and tell her OUR PEDIATRICIAN ran all the testing we wanted.. Its funny because Dr. Byrd wanted her email address.. He was concerned as to why she was so against the testing.. I just love that man! Well I'm off to work! Have a great weekend. We have a big crawfish boil tomorrow at the beach and Ethan and the kids are excited! so that makes me excited!!! :)
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Permalink Reply by Alyssa (barbara-mom) on
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I can relate to all of you! My daughter's first patch of AA was last May when she was 8 years old. It came back but this past January it attacked her full force and she is missing most of her hair on the top of her head. I got her a wig because she thought she wanted to wear one. Well, she wore it once and never again. Luckily she isn't letting her AA almost becoming AT get to her. She has a great attitude and after speaking to her class about her condition, the kids have been fine with her. She certainly deals with it better than I do. I continuously cry when I am alone and deal with guilt feelings as well as helplessness! I know things could be worse, as I hear from many, but it doesn't change how I feel. We have tried injections but haven't seen any results yet. I am close to stopping it and letting nature take over. It's hard because I want to know that I have tried everything. Alopecia World is a good outlet to let our true feelings out. My thoughts are with all of you!
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Permalink Reply by Deanna on
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Awe...my daughter is 29 months old and has only about 30% of her hair left:( Right now i am going through a phase of"to shave or not to shave it"...ive been having a really hard time with this as well.I know its just hair,and im thankful that she is not ill at all,but it is still"hair".I am the girl who"puts on makeup to go to the mailbox"...I really hope that i can raise her to give her the confidence that she is going to need.My worry is how do i tell her that it doesnt matter what anyone else thinks..when i myself care what others think.Ive had quite a few good cries over this.I do believe that in the end her having alopecia is only going to make all of us stronger people.I love that i came across this site..its nice to know that others feel the same.
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hi, im 28 years old, and i lost all of my hair wen i was 8 years old, and it was a further 8-9 years till it started to grow bk, u r not a bad person for wanting to protect your daughter from all the nasty stares and comments people make,these people r idiots, the more people know about your daughters condition the more understanding they will b,then its up to the parents to educate children to stop all the ignorance relating to aa. You like to make an effort with your apperance, good for u ,now wot u need to focus on is showing your daughter that with or without hair she is just as beautiful, the only thing she will miss out on is bobbles, but so what, she can stil wear head bands if they make her feel good about herself,wen people see her walking down the street smiling and happy people will see its nothing to b scared of and is just another happy little girl
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Permalink Reply by CHARLENE WILSON (Chayenne's Mom) on
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I know exact;y how you feel! My 21 month old only baby girl has just lost ALL of her hair, including eyebrows and lashes. She also has atopic dermatitis, so her prognosis is not good. We have been using topical steroids and have started seeing some gold colored regrowth, but I have to wait until Oct 4 to show it to the doctor. Sometimes I cry until my eyes are swollen....and adults could be so rude, I especially hate the stares. I pray that she grows up to be a strong, brave girl, able to handle this condition. My one bit of advise.....do not give up hope!
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